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triple negative but ? not having chemo

38 REPLIES 38
thope
Member

Re: triple negative but ? not having chemo

Hi bbrown21

 

I'm also in the same situation. Can you please tell what was your diagnose exactly? Also, could you tell us how did you know that chemo would only give you a 3% chance of not coming back? Did you doctor get that information out of a genomic test or something like that? How do they decide on chemo or not? I really can't understand if I can get a choice or if I just have to accept my doctor's advice as they are just following guidelines, right ... who am I to disagree..  😕 

 

Thank you so much!

Mishy18
Member

Re: triple negative but ? not having chemo

Wish i could help more but i had an invasive TN as well as TN DCIS so i had surgery chemo rads they never really spoke about the DCIS to me just that it was removed along with invasive and the treatment i would definitely speak to your team about your concerns about it recurring and they should discuss in more detail risk etc i agree TN DCIS is always graded high but if you had nio invasive the treatment plan could be very different for you best of luck and i hope your treatment goes well and try nit to worry its difficult at time of diagnosis you worry but your bc team will have the right plan in place for you x i had my treatment in 2017/18 was finished completely in feb this year x
Lindylou62
Member

Re: triple negative but ? not having chemo

Hi there

i have been diagnosed with a 30mm tumour that is high grade DCIS that is triple negative. I don’t seem to be able to find any information about this on any website other than to tell me that it is more likely to recur than other DCIS. Is anyone else on her in the same position? Does anybody know where I can find out more information? Thanks in advance. 

bbrown21
Member

Re: triple negative but ? not having chemo

Hi hmshowe

I've only just joined this forum and saw your comments. My TNBC was exactly the same diagnosis as yours. I dont know what you decided to do regards treatment as was a few months ago now, but just to let you know that I decided against Chemo (as was only giving me a 3% more chance of it not coming back) and opted for radiotherapy - i think it was about 28 sessions.  This was almost 9 years ago and so far so good. I know everyone is different but just thought I would share this with you in case you didn't have the chemo. Whether I did the right thing only time will tell. Just have to stay positive!

NYHope
Member

Re: triple negative but ? not having chemo

Dear Robin.Reid,
do you mind my asking how old you are and what you decided re chemo?
Mishy18
Member

Re: triple negative but ? not having chemo

Robin hi i was TN stage 2c grade 3 and node involvement before i knew about the node involvement i was told chemo anyway due to the fact that there is no aduvant treatment after active treatment i know i wouldn't be forced to have it if i didn't want to but for me i wanted to throw everything at it i feel for you being told to decide yourself maybe ask your team to explain things in more detail about benefits etc of not having /having chemo xx
robin.reid
Member

Re: triple negative but ? not having chemo

Hi Carol,

I read your post on here and this is me to a "t" right now.  I have until Thursday to decide to do Chemo or not.  I am stage 2, grade 3 and triple negative.  Back in September I had a lumpectomy which was successfull at removal of tumor and margins are clear and lymph nodes are clear.  

How are things going now with you?  What did you decide?.

Robin

NYHope
Member

Re: triple negative but ? not having chemo

Hi Confused-

 

My twin sister was diagnosed with TNBC Stage 1 no lymph node involvement 7mm tumor in June. She does not want to do chemo --I hope you are well and wondering what you decided.

Chick1
Member

Re: triple negative but ? not having chemo

Hello Confused, 

 

Thank you.  It is good to hear that you are taking charge and have arranged another appointment to discuss matters further.  It's good to go in prepared with a list.  That bit made me ☺ as I did the same thing - a long and detailed list!  I had a very patient and approachable medical oncologist thank goodness. 

 

I think people should not be afraid to ask and question, even to question why that particular chemo regime,  or what has proved the most effective for this type of cancer etc.  After all,  it is going to affect us emotionally and physically in the short term and possibly long term.  We need to be confident of getting the best return possible for our investment. 

 

Hope your meeting is informative,  productive and guides you into making the best decision for you.  

 

Wishing you well,  🐣 Chick X

confused
Member

Re: triple negative but ? not having chemo

Hi Chick 1

 

Thank you so much for the clear and easy to understand reply, I am so grateful for your calm, clear thoughts. On reading your reply this morning, I promptly arranged a further meeting with my oncologist, this time with a list of questions I would like to ask.

I do know that if I were to go ahead with the chemo, it would EC chemotherapy- 2nd generation hence the 5 year prediction. 6 doses, every three weeks. The chemo is purely to wipe out any stray cancer cells that may or may not be lingering.

You are so right, I have to give this my best sh

Chick1
Member

Re: triple negative but ? not having chemo

Hello Confused,

 

What a predicament.  I did not have the same regarding chemo but had to make a similar decision with regard to radiotherapy.  Oh gosh - it was like damned if I do and damned if I don't. I did seek a second opinion on the matter so did not just accept what one Clinical Oncologist had said.   I went with it in the end - just so I knew I had thrown all at it should there be a recurrence.  I could not do with the self flagellation if I had not done it and then I have a recurrence. 

 

My cancer was not TN.  It was triple positive.  It was  classed as "aggressive" due to it being Her+ grade 3 - lovely. The stage was stage 2 (and they were n't too clear if it was 2a or 2b!).  I had no positive nodes. I see your tumour was classed as grade 2 rather than grade 3 which majority of TN tumours are (or maybe that is my confused knowledge being displayed!!  I am sure someone will put me right!).

 

Anyway, for Her+ tumours, chemo is almost always the way to go (as it would seem to usually  be the case with (node positive) TNBC).  If I input my details into Predict, then chemo only gave an extra 3% for the five year timeline (7% for 10 years, and 10% for 15 years).  Well for that initial 3% etc, I would still have taken it.  Of course it may be argued that with my type of cancer, I could not have the Her+ treatment without the chemo,  with the Her+ treatment giving extra potential benefit,  So over five years, the Her+ treatment gives an extra 2% benefit.  Hence a total benefit of 5% over 5 years.  You have to ask yourself, are you willing to go through the treatment for the potential gain?

 

NHS Predict tool is only a guide not a definititive tool.  You can use the tool yourself  online as long as you have the relevent details. Whether one has chemo or not, there is no guarantee that the cancer will not return.  Positive nodes can increase the chance of recurrence but it can also depend upon how many are affected. It's all really still a game of chance whatever the size, type, grade, etc

 

You can not fully weigh up the pros and cons without knowing which type of chemo and how many treatments would be undertaken should you take the chemo route.   It may be an idea to find that out first so the hospital can give you fact sheets on each treatment and the potential side effects.  The Medical Oncologist you had the initial discussion with,  is the person who should be discussing this in detail with you.  Is it possible for you to arrange another appointment with them to discuss matters in more detail?  Remember, you can also ask for a second opinion from another Oncologist.  You could also discuss matters with a BCN, if you have a supportive one or contact Macmillan support or the Nurse helpline here who may be able to help you with the information in order for you to make an informed choice and decision. I think Patient Liason Services can also help to arrange for you to speak to the right people.

 

Sometimes we do have to make these hard decisions and we need to make them and be comfortable with them afterwards.  Good luck with it all. 

 

Very best wishes,

Chick X

 

 

 

 

 

 

 

 

confused
Member

Re: triple negative but ? not having chemo

Hi, I was diagnosed with TNBC Grade 2 in June 2018, aged 66. I received surgery in July, lumpectomy together with sentinel lymph node biopsy. Results showed that of the five lymph nodes removed, cancer cells found in one. Stage 2. My surgeon was on holiday for my follow up appointment after surgery and either radiotherapy or axillary clearence were discussed. 

However, at my next appointment with my surgeon, he said as I was TNBC, chemo was my next step and a meeting was arranged for me to discuss same with a medical oncologist whom I meet this week. This is where I become really lost and confused. I believed we had chemo to ensure there were no stray cancer cells about, a mop up and reduce the chance of a reoccurrence. The Oncologist had carried out the PREDICT on line decision making tool and said receiving chemo would only benefit me by 3 - 5 %, in other words, out of a hundred women, less than 5 would benefit from receiving chemo. He said that my surgeon have removed my cancer and that there was no guarantee that the cancer wouldn't return at a later date with or without chemo. I have to weigh the potential harm as well the benefits of chemo, I don't feel qualified or experienced to make this decision, it is like tossing a coin, heads chemo, tails, no. Who could I talk to who would be able to advise me in my decision making.

Mishy18
Member

Re: triple negative but ? not having chemo

Its been just over a year since diagnosis tnbc with node involvement had the wle chemo rads yeah it's tough but if had to would do it again TN has no other protection other than the treatment no hormone blockers to help protect us or targeted therapy like herceptin its an aggressive cancer so for me it was a no brainer the thought that any stray cells msy have got away was enough to convince me that chemo was the right thing although i wasn't given a choice, most tns are given chemo as there isn't a drug for us afterwards i see the diagnosis treatment recovery etc as a year i lost to be able to still be here i feel great now and really grateful that i was able to kick cancers butt
1852
Member

Re: triple negative but ? not having chemo

Hi  hms sorry you have to come to the site where everyone wishes they didn't have to be here but are very supportive . I had RT mastectomy in 2014 I had two lumps both tnbc I understand that all triple neg is grade 3 .i had chemo following mastectomy I didn't have node involvement it was for bibs and braces must admit I never thought about not having it . It wasn't great but most of us get through ok . The decision can only be yours but for me it was a no brainier good look  with whatever you decide DEN

hmshowe
Member

Re: triple negative but ? not having chemo

Hi Nikki.

 

well done on reaching 5 year mark. Must feel great.

 

Forgot to mention mine was 15mm which they class as small however it still has the nasty grade 3 status!!.

im going to see my onc on 28th June to have a chat about treatment. I've been trying to get as much info together as possible to take with me, I have so many questions 😔.

 

Thanks for replying Nikki and I wish you all the luck in the world.

 

x

Nikki49
Member

Re: triple negative but ? not having chemo

Hi carol,
I was triple meg too with a 34mm lump plus 1 sentinel node had cancer.
I wasn’t given a choice, I was told I was having chemo!
However I would have gone through everything they recommended, I wanted to chuck everything at this vile disease.
Chemo is certainly not a walk in the park and at times I felt pretty awful but it’s just a few months out your life. The way I see it, it’s short term pain for long term gain.
Im 5 years clear this year & the days of chemo are just a nasty memory.
Best of luck in whatever you decide x
hmshowe
Member

Re: triple negative but ? not having chemo

Hello everyone.

 

I'm new to this site, really gr8 to be able to talk to people going through this nightmare.

 

I was diogniosed with TNBC grade 3 clear margins and no node involvement on 10th May. Im having real trouble with deciding on chemo for what they call 'mop up'. Happy to have radiotherphy to treat the breast area where the cancer was but really don't want to go through chemo for a just in case.

 

Please share your stories?

 

Thanks

Carol

 

CatherineJ
Member

Re: triple negative but ? not having chemo

Hi Amberstone just wondered how you were doing now and if you needed any more treatment. I'm TN and had 20 rads.
CatherineJ
Member

Re: triple negative but ? not having chemo

Update - had to have second surgery 1 month after first as they didnt get all the tumour! So exhausted by it all and trying to reassure my 19 year old son.  Now 2 weeks later, path report says clear margins and 5 clean lymph nodes. Tomorrow is appt with Oncologist to see if I need chemo or just radiotherapy.  Had been doing so well with positive mental attitude but feel so wobbly and tearful today at thought that just one meeting can change my life again.  Came off HRT on 1st Jan and have to say, so far, it's been a breeze but getting very hot now, lol!

CatherineJ
Member

Re: triple negative but ? not having chemo

Hi, thanks for trying to PM me, hooe this works??

Catherine

bernadetteh
Member

Re: Tnbc do I need chemo with a stage one grade 3 tumor following double mascetomy

Hi Wendy,

Yes you do TN is very aggressive! I have had BC four times now. I have BRCA1 and I'm also TN. I thnk your Oncologist will want you to have chemo, but of course the choice has to be yours. Good Luck x

AnnDaw
Member

Re: Tnbc do I need chemo with a stage one grade 3 tumor following double mascetomy

Hi Wendy I had right mastectomy with node involvement and am grade 3 tnbc and I believe that chemo is recommended for grade 3 tnbc but do your checks you have to feel comfortable with what feels right for you.Personally I want everything thrown at this. After chemo I will be having node clearance followed by rads so a long way to go yet. Had 3 FEC and start 3T tomorrow. Maybe as your tumour is very small and double mastectomy with clear margins and no nodes involved you may not need chemotherapy. My tumour was 50mm so quite big but they never mentioned double mastectomy to me so I might ask about that. Did you ask them for double mastectomy or was it your b/team  suggestion? The plan is for implant when treatment and ops are all done with but Im thinking get rid of lefty as will probably worry about it taking up residencentre there next. Oh so bloody much to think about eh.xx

Lizzy_BCC
Member

Re: Tnbc do I need chemo with a stage one grade 3 tumor following double mascetomy

Hi Wendytmx, 

 

I am sorry you are going through this anxious time and I am sure some of our users will be along soon to offer their support.

 

In the meantime I have moved your post to a busy thread who are disscussing chemotheraphy and tnbc where I am sure some users can provide information and support. 

 

If you would ever like to talk you can always call our support line at 0808 800 6000 who can talk to you about treatment plans and offer a friendly ear.

 

Best wishes, 

 

Lizzy 

 

Digital Community Assistant

Downbutnotout
Member

Re: triple negative but ? not having chemo

Hi Catherine - sorry, I've only just seen your post. I tried to PM you but it won't let me.

 

I don't know if you PM me if it will then let me reply - worth a try?

X

Wendytmx
Member

Tnbc do I need chemo with a stage one grade 3 tumor following double mascetomy

I've had a double mascetomy last week, a grade 3 15mm tumor was found and is triple negative.
I have been given an appointment to see the oncologist next week and I'm worried I'll need chemo.
Has anyone experienced a similar thing? If so what what your treatment plan?
CatherineJ
Member

Re: triple negative but ? not having chemo

Hi Downbutnotout (love your name)

I was diagnosed with TNBC in December (happy christmas, not) then had a lumpectomy for a 6mm tumour and 5 lymph nodes removed which were all clean. Thank goodness.

I really do not want to go down the chemo route as it is so small, if at all poss and have an appt with an Oncologist next Friday. It feels like they think I would be mad to say no, and obviously I do not want to be foolish.  Has anyone here sought a second opinion, and if yes, how would I do that? What do I need?  Could I have just the radiotherapy?

Thanks for reading.

amberstone
Member

Re: triple negative but ? not having chemo

Hi Downbutnotout     Happy New Year or the very best it can be for anyone.  Thanks for your reply sorry not been on for few days we had a 4 day New Year Break just what I needed as we had had to cancel 2 summer holidays due to my problems. I enjoyed every day, glad we went.

Dont apologise you did not offend me at all, it just made easier reading than some of the things so it just made me go backwards a bit and was good to make me rethink and I understood your reply so I thank you for the re-assurance. The more I can understand then the more I see I should be happier at the outcome and not dwell on it. I am at the Specialist on Tuesday but I think that is just for to check the surgery.

Having not followed you on here I dont know your situation but I wish you well.   May speak soon. M

Downbutnotout
Member

Re: triple negative but ? not having chemo

Hi amberstone - I'm sorry if what I said has caused you concern. No need to apologise for voicing your feelings, that's the purpose of the Forum, to be able to share your feelings and experiences with people who understand.

 

With TN we don't have the targeted therapies to follow primary treatment, unlike with ER+, PR+ and HER2+ cancers. Clear lymph nodes and margins is good news though. Your onc will have weighed up the odds of what is the bigger risk to your health. It would be very disappointing if your heart was damaged by chemo for a slim risk of there being stray cells. The rads should have mopped up any stray cells in the local area, and with no cancer in your lymph nodes it suggests it hasn't been on the move, and hence your onc's decision. I understand your worries - after all, it's not that long since this all happened to you. In time the cancer will take up less of your thoughts. In the meantime, your team will give you regular check-ups to ensure that things are all ok.

 

Wishing you a happy and healthy 2016.

X

amberstone
Member

Re: triple negative but ? not having chemo

Hi Cassy B     Were you triple negative (I am 68)   I am triple negative Grade 3 Ductal Invasive only had 15 sessions of Rads Oncologist decided not to give Chemo due to my heart condition, but was not offered any meds/tablets

amberstone
Member

Re: triple negative but ? not having chemo

Hi Downbutnotout -- not been on the site for ages.

I was diagnosed in June 2015 with ductal invasive 6.mm Grade 3 triple negative. (i am 68)

I have just read your post and have gained more info from this than I probably heard/understood from the Oncologist.  I didnt know there wasnt as much treatment for TNBC as others.  So is it unlucky to be TN.  I did hear fast growing?

 

I had Sentinol Node Biopsy/Lumpectomy.  Lympth Nodes were clear, and I understood him to say margins were clear caught it early.   Was told by Surgeon I would need Chemo and 15 Rads.  Went to see Oncologist who had the final say----   NOT giving me Chemo as the risk to my heart, should I get an infection (stents and Bypass) would outweigh the benifits of Chemo?  I only had 15 sessions of Rads. Finished October.

If breast clear and lympth nodes clear does that mean it has no way of getting out to anywhere else and they have "cut it away" I heard him say Chemo just to be sure no rogue cells have escaped.

 

I cant get it out of my head every day at some point that "if they offered me Chemo - I needed it to possibly catch any rogue cells in rest of my body - then is it still in my body? - as Rads only target the Surgery area"  So what is it just a waiting game and fingers crossed they keep a close eye on you.    Have I got breast cancer or have I had breast cancer and it has gone?  Oncologist just says they are not God and as far as they know its gone from where it was!

I just feel I have a mental block when I ask a question and get an answer nothing is stopping me from thinking "I have breast cancer and it can kill me - when"

Sorry to be so morbid I am not usually like this I am getting on with everyday life and apart from being tired Rads were easy for me.

Boodles
Member

Re: triple negative but ? not having chemo

Hi , i had triple negative and grade 3. I had a lumpectomy in may and am going through chemo now and then will finish of with 15 rads. It was a huge decision as i had said from day 1, am not having chemo. But as time went on i had to do what i could live with and my daughter (age24) said as simple as this. "Mum , how can you even think about not having chemo? If it was 1 of us kids,  or me dad, you would make us do it, so why are you different, you need to give yourself and us the best possible chance of getting rid once and for all" and she was right !!!  decision made !!!

Downbutnotout
Member

Re: triple negative but ? not having chemo

Hi Mad4cavs - I agree with Sue123. Whilst the FEC-T chemo can be quite harsh I would go for the systemic treatment just to be on the safe side to mop up any stray cells that may be lurking without detection. TNBC doesn't have as many treatment options as the hormone positive and HER2 positive breast cancers. No criticism of some comments you've received but if they have a hormone treatment they have years of added protection. There's nothing like that currently for TNBC patients. Plus, grade 3 cells are fast growing but as chemo targets fast growing cells then it should clear any up.

 

It's your decision and does need carefully considering so you've done the right thing asking for advice from people who've been in your shoes.

 

I wish you all the best.

X

Angela1972
Member

Re: triple negative but ? not having chemo

Hi I have the same. I'm 42. I'm three quaters of the way through radiotherapy and also didn't need chemo as I have an underline heart condition. Deep breaths. All will be fine. I wish u better
Orchard
Member

Re: triple negative but ? not having chemo

Hi!
I was diagnosed in Feb '13 with grade 3 trip neg ( I was 48) and was immediately offered chemo and rads but felt this was more due to the grade 3 ness than the trip neg ness! I had 6 x EC and 15 rads but later discovered I'm BRCA1 so have recently had bi mx with LD recon.
mad4cavs
Member

Re: triple negative but ? not having chemo

Just used predict

it says there's an extra 7 alive after 5 years and after 10 there's 10 extra alive wow I am going to print this and show him

Sue123
Member

Re: triple negative but ? not having chemo

Hi mad4cavs, I am almost the same as you. I was diagnosed December 2013 aged 59 with a 15mm triple negative tumour and had chemo. My oncologist showed me the Predict website (you can google it). It shows that I have about 6 per cent advantage for living longer if I had chemo and was advised to have the chemo and grabbed it with both hands.

Do make sure you make the right decision as I was told that your first chance of beating this thing is your best chance. Be your own advocate and ask to speak with an oncologist about your situation

Best wishes, Sue

 

CassieB
Member

Re: triple negative but ? not having chemo

My 'lump' wasn't as big as yours but they were able to remove it with a clear margin and the one lymph node they took out was clear so I just had 15 sessions of radiotherapy and am taking Anastrozole for 5 years (I'm now nearly 70 and had the op last year).

Kiki2
Member

Re: triple negative but ? not having chemo

My tumour wasn't triple negative but I had a mastectomy and my sentinel node was clear, so I was told I didn't need chemo or rads, I'm on tamoxifen for 5 years.
mad4cavs
Member

triple negative but ? not having chemo

im worried i have triple negative 17mm BC  grade 3,found on mammogram, i had a fine needle biopsy of lymph nodes and core biopsy to lump lymph nodes came back clear having sugery next week with sentinal node biopsy ,my consultant has said if i have a clear margin and  sential lymph nodes are clear it means they have caught it early and i wont need chemo,just radiotherapy as a mop up,but after reading up on ,TNC im worried ,anyone else on here not had chemo im not young im 60 yrs